Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Kim, This is something I battle with as well. Have you tried Senokot? It's a veg. laxative and isn't as harsh as the stimulants. It comes in many forms including liquid. What about prune juice? It tastes awful but works for some people. I'm sure you've already tried the Miralax type products. I'll let you know if I find something that works for me, but thats about all I can think of to offer for her. Hope something I've said will be of help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Kim, This is something I battle with as well. Have you tried Senokot? It's a veg. laxative and isn't as harsh as the stimulants. It comes in many forms including liquid. What about prune juice? It tastes awful but works for some people. I'm sure you've already tried the Miralax type products. I'll let you know if I find something that works for me, but thats about all I can think of to offer for her. Hope something I've said will be of help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Kim, This is something I battle with as well. Have you tried Senokot? It's a veg. laxative and isn't as harsh as the stimulants. It comes in many forms including liquid. What about prune juice? It tastes awful but works for some people. I'm sure you've already tried the Miralax type products. I'll let you know if I find something that works for me, but thats about all I can think of to offer for her. Hope something I've said will be of help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 We have struggled with this for years. We realized we would just have to rotate between different things. Some things that were rich in fiber made her cramp. Other things were just to weak. Some things would work for a month or so then stop. That's when we would have to change to something else. We could go back to it later and it would work again. We finally decided to try Miralax powder. It has been wonderful!!! is 10 and drinks from a bottle. We mix the Miralax in with her milk. We use it twice a day. We tried a capful to begin with but it caused her to cramp and have loose bowels. We went to half a capful twice a day and it's wonderful. If you haven't tried it I would suggest giving it a try. Best of luck! Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 We have struggled with this for years. We realized we would just have to rotate between different things. Some things that were rich in fiber made her cramp. Other things were just to weak. Some things would work for a month or so then stop. That's when we would have to change to something else. We could go back to it later and it would work again. We finally decided to try Miralax powder. It has been wonderful!!! is 10 and drinks from a bottle. We mix the Miralax in with her milk. We use it twice a day. We tried a capful to begin with but it caused her to cramp and have loose bowels. We went to half a capful twice a day and it's wonderful. If you haven't tried it I would suggest giving it a try. Best of luck! Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 We have struggled with this for years. We realized we would just have to rotate between different things. Some things that were rich in fiber made her cramp. Other things were just to weak. Some things would work for a month or so then stop. That's when we would have to change to something else. We could go back to it later and it would work again. We finally decided to try Miralax powder. It has been wonderful!!! is 10 and drinks from a bottle. We mix the Miralax in with her milk. We use it twice a day. We tried a capful to begin with but it caused her to cramp and have loose bowels. We went to half a capful twice a day and it's wonderful. If you haven't tried it I would suggest giving it a try. Best of luck! Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 We were always told pear juice, for some reason it works better than prune juice, plus it is better tasting. Oh also mineral oil in the drink, but it is awful looking and tasting. Shake it up really well. Geri-Anne and Wyatt, complex I- -- In Mito , " mitocure2002 " wrote: > Hi members, > I hope some of you can give me your advice. My nine year old > daughter has N.A.R.P. mito. Like alot of mito patients, she has > sluggish bowels. Over the years I have tried everything for her. > The powdered fiber drinks, fiber wafers, Fletchers, and > suppositories. Everything seems to work great for awhile until her > system begins to get use to it. She is not on a feeding tube and > swallowing a pill is impossible for her. She is affected cognitively > so she is very scared of things like having to have a suppository. > She does eat a good diet with adequate fiber and fluids. Does > anyone have any ideas for me to try with her? > Also does anyone else have a N.A.R.P. child or know of anyone > who does? So far in her nine years I haven't ran across any other > N.A.R.P. children. > Thank you, > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 Dear Kim, If by NARP, you mean Leigh’s disease, my family has this. I believe the 2 terms are interchangeable. My daughter died of Leigh’s last year at age 8 and a half and you can read about it on her website. I also have a 6 and a half year old with it. The specific mutation is T8993c and the % mutation is 90% for Samya the one that died and 92% for Leanna, my 6 year old. Samya also suffered all her life with constipation and the last 2 months of her life had pure hell and no bowel movements normally. Leanna has never had this issue, but she has been very healthy until just 3 weeks ago. She had a sinus infection (the first sickness in a year) and got ataxic. Now she is improving with energy, balance etc, but developed a neurogenic bladder as of yesterday when she went to a urologist. He said this might be permanent or might improve. Yesterday, he showed me once how to cath hewr and told me to go home and do it because her bladder had to be emptied. Luckily, I got everything ready and since this morning, she has been urinating on her own. NO cath so far and I hope to god she continues to improve. I am not ready for this to be a permanent damage. Can you tell me how affected is your child, what mutation is it and what is the %? I also am curious to find others with the same because my girls , according to doctors, did very well for their form so far. Samya was so well until the last 2 months of her life and Leanna has surprised us so far until this episode . I started to have false hope until this happened. Good luck , Suhad Haddad Samya’s website is www.samya.org From: mitocure2002 Sent: Friday, January 09, 2004 7:50 AM To: Mito Subject: Help constipation Hi members, I hope some of you can give me your advice. My nine year old daughter has N.A.R.P. mito. Like alot of mito patients, she has sluggish bowels. Over the years I have tried everything for her. The powdered fiber drinks, fiber wafers, Fletchers, and suppositories. Everything seems to work great for awhile until her system begins to get use to it. She is not on a feeding tube and swallowing a pill is impossible for her. She is affected cognitively so she is very scared of things like having to have a suppository. She does eat a good diet with adequate fiber and fluids. Does anyone have any ideas for me to try with her? Also does anyone else have a N.A.R.P. child or know of anyone who does? So far in her nine years I haven't ran across any other N.A.R.P. children. Thank you, Kim Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 Dear Kim, If by NARP, you mean Leigh’s disease, my family has this. I believe the 2 terms are interchangeable. My daughter died of Leigh’s last year at age 8 and a half and you can read about it on her website. I also have a 6 and a half year old with it. The specific mutation is T8993c and the % mutation is 90% for Samya the one that died and 92% for Leanna, my 6 year old. Samya also suffered all her life with constipation and the last 2 months of her life had pure hell and no bowel movements normally. Leanna has never had this issue, but she has been very healthy until just 3 weeks ago. She had a sinus infection (the first sickness in a year) and got ataxic. Now she is improving with energy, balance etc, but developed a neurogenic bladder as of yesterday when she went to a urologist. He said this might be permanent or might improve. Yesterday, he showed me once how to cath hewr and told me to go home and do it because her bladder had to be emptied. Luckily, I got everything ready and since this morning, she has been urinating on her own. NO cath so far and I hope to god she continues to improve. I am not ready for this to be a permanent damage. Can you tell me how affected is your child, what mutation is it and what is the %? I also am curious to find others with the same because my girls , according to doctors, did very well for their form so far. Samya was so well until the last 2 months of her life and Leanna has surprised us so far until this episode . I started to have false hope until this happened. Good luck , Suhad Haddad Samya’s website is www.samya.org From: mitocure2002 Sent: Friday, January 09, 2004 7:50 AM To: Mito Subject: Help constipation Hi members, I hope some of you can give me your advice. My nine year old daughter has N.A.R.P. mito. Like alot of mito patients, she has sluggish bowels. Over the years I have tried everything for her. The powdered fiber drinks, fiber wafers, Fletchers, and suppositories. Everything seems to work great for awhile until her system begins to get use to it. She is not on a feeding tube and swallowing a pill is impossible for her. She is affected cognitively so she is very scared of things like having to have a suppository. She does eat a good diet with adequate fiber and fluids. Does anyone have any ideas for me to try with her? Also does anyone else have a N.A.R.P. child or know of anyone who does? So far in her nine years I haven't ran across any other N.A.R.P. children. Thank you, Kim Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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